Shared Decision-Making: Where the Rubber Meets the Road

It takes real discussions, not forms -- but who has the time?

Recently, getting dressed after working out in the gym, the guy in the next locker decided to complain to me about his recent surgery.

Having lockers next to each other had led over time to "What do you do for a living?" After discovering that I was a physician he has occasionally asked some medical questions, and done what a lot of people do when they know you're a healthcare provider, which is complain about the healthcare system in general.

He had had a repeat surgery on his lower back for a herniated disc and chronic sciatica, and come out of the procedure with an area of pain and neuropathy in his leg, which the surgeon initially told him might resolve, but might take up to six months to fully resolve, but also might persist.

Now, passing that six-month mark, with no improvement in his symptoms, he was frustrated and a little angry, and needed to vent.

He told me that having these new symptoms was worse than the pain in his back that had sent him to seek surgery in the first place, and he wished he never had the procedure done.

I asked him if the surgeon had told him this was a possible complication of the procedure, and he told me, no way, I never would've done this if you told me there was a chance that my leg would be painful after the surgery, no way would I have signed up for the surgery and gone ahead with it.

Thinking back to what happened in the surgeon's office before the procedure, and in the pre-surgical prep area, where he probably had dozens of people push dozens of pieces of paper in front of him and told to sign, consents and lots of information about his procedure, and I'm sure somewhere in there was a delineation of the risks, benefits, and alternatives, and that he must have signed something saying that he understood all of these and accepted those risks.

And the surgeon's office notes surely include a templated block of text that includes a long list of possible complications, including but not limited to heart attack, stroke, your head exploding.

All of the patient's questions were answered to his satisfaction.

Many of years ago, a patient of mine with severe and debilitating psychiatric illnesses was admitted to the hospital with a dramatic worsening of her chronic renal failure. Things had gotten so bad the decision was made to proceed with hemodialysis, so the transplant service was called to get her consent for long-term access for the management of her disease.

She had stabilized clinically, and the surgical team went into the room to get consent from her for placement of an arteriovenous fistula. When I noticed they came out of the room only two or three minutes later, I made the mistake of asking them if she'd agreed to having the access placed. They said yes and they had explained all of the risks to her and that she said she understood.

Unfortunately, I made the mistake of telling them that she was currently and chronically psychotic, with delusions that the United States Army parachuted into her backyard every evening to deliver bricks of gold to her house.

The reason I told them this was I figured since she agreed to their procedure, they quickly and easily accepted that she was capable of giving consent. But had they truly explained to her the risks and benefits of the procedure, and was she able to understand all of those?

If she had not agreed, they probably would've immediately called a psychiatry consult and demanded that she be declared incompetent, and pursued consent through other means. But since she agreed, no one thought for a moment that she might not be capable of agreeing.

This example comes to mind because we have just been advised of a new initiative that has come down, to document that all patients receive complete and detailed education on every medication they receive, every medical condition they have, and that all of their questions are answered. Auditors and regulators want to be able to see a trail in every chart for everything. This is coming about in part because we've often seen that patients are prescribed new medicines, where no one really goes over the risks, benefits, and alternatives.

While this seems like a really good idea, in the brief appointment times we have it isn't really feasible to engage in what would likely be a long and complicated discussion for every single medical decision we make, every prescription, every test, every diagnosis, every decision to screen, every decision not to screen.

I'm not saying we should go back to the old days of paternalistic medicine, where what the doctor said was final, was right, and was what the patient should do, no discussion, no involvement of the patient, no collective discussion, no shared decision-making.

But it's been suggested to us that we create a macro in the electronic health record that quickly and easily allows there to be a documentation of education on any topic.

Click and done.

My fear is that this will lead to a lot of clicking of the button that a discussion was had, and less likely that it will actually lead to truly better discussions and shared decision-making. Not more education, not a more engaged patient, but a better electronic health record trail for some audit down the line.

Clearly we're not doing enough, our patients are leaving our office visits whether they be primary care, subspecialty medicine, or a surgeon's office, more confused, more overwhelmed by the enormous choices they need to make, befuddled by the medicines we are prescribing, lost and confused in the plan. And this only leads to poor patient satisfaction, poor outcomes, and increased healthcare expenditures.

Documentation is important, we need to know what happened, but we need the truth, and we need the resources to be able to really educate our patients, to really engage them in that shared decision-making process about each and every step of their healthcare, and that only comes with time and additional personnel and the whatever we think our patients need to really get to the best state of health.

Without this, it's just another box to click, just another something we're being asked to do so that someone who's decided to audit us on this hot button item of the moment will be happy once they see a report.

It's our job, and our responsibility, our passion and our mission, to make sure that what actually happens is that patients really are engaged, really do understand, really do know why we're giving them this medicine, what side effects might occur when they take it and what to do if they experience those side effects, otherwise we're fooling ourselves that this is really patient-centered care.

All side effects explained, all risks reviewed, all questions answered.

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